Civic Intelligence

Diamond Blackfan Anemia Foundation

EIN 16-1459422 • 501(c)3 • West Seneca, NY

Profile

The mission of the diamond blackfan anemia foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

20 Tracy Lynn LaneWest Seneca, NY 14224

www.dbafoundation.org

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

18th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Liabilities / Revenue

19th percentile

0.00x

Tied with the lowest-debt nonprofits in its peer group.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Net Margin

74th percentile

20%

Higher net margin than 74% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Source year 2024

Top Officer Pay

Score unavailable

No value available

No filing with officer rows is available for this organization yet.

Asset Growth

60th percentile

7.9%

Faster asset growth than 60% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Revenue Growth

12th percentile

-25%

Faster revenue growth than 12% of similar nonprofits.

501(c)3 • $1M-$5M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets18th percentile

Assets

Up

$1,779,752

Up $129,984 (+7.9%) from 2023

Liabilities

Flat

$0

Flat from 2023

Net Assets

Up

$1,779,752

Up $129,984 (+7.9%) from 2023

Operations
Liabilities / Revenue19th percentileNet Margin74th percentile

Revenue

Down

$499,448

Down $164,697 (-25%) from 2023

Expenses

Down

$397,142

Down $323,241 (-45%) from 2023

Net Income

Up

$102,306

Up $158,544 (+282%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth60th percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$2.0M$1.5M$1.0M$500K$0Assets 2010: $322,053Liabilities 2010: $02010Assets 2011: $295,818Liabilities 2011: $2,5792011Assets 2012: $299,141Liabilities 2012: $2,580Net Assets 2012: $296,5612012Assets 2013: $482,785Liabilities 2013: $2,936Net Assets 2013: $479,8492013Assets 2014: $499,418Liabilities 2014: $2,924Net Assets 2014: $496,4942014Assets 2015: $759,621Liabilities 2015: $2,911Net Assets 2015: $756,7102015Assets 2016: $771,750Liabilities 2016: $487Net Assets 2016: $771,2632016Assets 2017: $832,018Liabilities 2017: $593Net Assets 2017: $831,4252017Assets 2018: $872,986Liabilities 2018: $0Net Assets 2018: $872,9862018Assets 2019: $1,015,194Liabilities 2019: $0Net Assets 2019: $1,015,1942019Assets 2020: $1,199,959Liabilities 2020: $0Net Assets 2020: $1,199,9592020Assets 2021: $1,469,505Liabilities 2021: $0Net Assets 2021: $1,469,5052021Assets 2022: $1,691,996Liabilities 2022: $0Net Assets 2022: $1,691,9962022Assets 2023: $1,649,768Liabilities 2023: $0Net Assets 2023: $1,649,7682023Assets 2024: $1,779,752Liabilities 2024: $0Net Assets 2024: $1,779,7522024

Highlighted filing

2024

Assets$1,779,752
Liabilities$0
Net Assets$1,779,752
Open 2024 Filing

Operations Trend

Revenue Growth12th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$800K$600K$400K$200K$0-$200KRevenue 2010: $189,069Expenses 2010: $195,268Net Income 2010: -$6,1992010Revenue 2011: $196,859Expenses 2011: $222,556Net Income 2011: -$25,6972011Revenue 2012: $225,921Expenses 2012: $228,672Net Income 2012: -$2,7512012Revenue 2013: $392,994Expenses 2013: $219,673Net Income 2013: $173,3212013Revenue 2014: $425,359Expenses 2014: $417,318Net Income 2014: $8,0412014Revenue 2015: $495,109Expenses 2015: $233,903Net Income 2015: $261,2062015Revenue 2016: $359,974Expenses 2016: $347,254Net Income 2016: $12,7202016Revenue 2017: $272,736Expenses 2017: $219,822Net Income 2017: $52,9142017Revenue 2018: $477,833Expenses 2018: $422,277Net Income 2018: $55,5562018Revenue 2019: $386,795Expenses 2019: $255,914Net Income 2019: $130,8812019Revenue 2020: $432,479Expenses 2020: $229,052Net Income 2020: $203,4272020Revenue 2021: $403,823Expenses 2021: $156,286Net Income 2021: $247,5372021Revenue 2022: $383,838Expenses 2022: $151,934Net Income 2022: $231,9042022Revenue 2023: $664,145Expenses 2023: $720,383Net Income 2023: -$56,2382023Revenue 2024: $499,448Expenses 2024: $397,142Net Income 2024: $102,3062024

Highlighted filing

2024

Revenue$499,448
Expenses$397,142
Net Income$102,306
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$1,779,752
Liabilities
$0
Net assets
$1,779,752
Revenue
$499,448
Expenses
$397,142
Net income
$102,306
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Detailed filing. Detailed filing data is available for this year.$1.78$0.00$1.78$0.50$0.40$0.10
2023Detailed filing. Detailed filing data is available for this year.$1.65$0.00$1.65$0.66$0.72$0.06
2022Detailed filing. Detailed filing data is available for this year.$1.69$0.00$1.69$0.38$0.15$0.23
2021Detailed filing. Detailed filing data is available for this year.$1.47$0.00$1.47$0.40$0.16$0.25
2020Detailed filing. Detailed filing data is available for this year.$1.20$0.00$1.20$0.43$0.23$0.20
2019Summary only. Only limited summary data is available for this year.$1.02$0.00$1.02$0.39$0.26$0.13
2018Summary only. Only limited summary data is available for this year.$0.87$0.00$0.87$0.48$0.42$0.06
2017Summary only. Only limited summary data is available for this year.$0.83$0.00$0.83$0.27$0.22$0.05
2016Summary only. Only limited summary data is available for this year.$0.77$0.00$0.77$0.36$0.35$0.01
2015Summary only. Only limited summary data is available for this year.$0.76$0.00$0.76$0.50$0.23$0.26
2014Summary only. Only limited summary data is available for this year.$0.50$0.00$0.50$0.43$0.42$0.01
2013Summary only. Only limited summary data is available for this year.$0.48$0.00$0.48$0.39$0.22$0.17
2012Summary only. Only limited summary data is available for this year.$0.30$0.00$0.30$0.23$0.23$0.00
2011Summary only. Only limited summary data is available for this year.$0.30$0.00$0.20$0.22$0.03
2010Summary only. Only limited summary data is available for this year.$0.32$0.00$0.19$0.20$0.01
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 11, 2025
Return Version
2024v5.2
Gross Receipts
$499,448
Mission and Program Overview

Mission

The mission of the diamond blackfan anemia foundation is to advance research initiatives that promote a better understanding, therapeutic strategies and a cure for this rare bone marrow failure syndrome. We are dedicated to providing patient advocacy, support and education services to individuals, families and medical professionals resulting in improvements in the diagnosis, clinical treatment and management of the disorder, while enhancing the quality of life of affected families worldwide.

To generate funds for the charitable and scientific purpose of providing support for diamond blackfan anemia patients, families and research.

Balance Sheet Detail
LineBeginningEndChange
Assets
Investments in Publicly Traded Securities$1,089,567$1,176,489▲ $86,922
Savings and Temporary Cash Investments$493,372$541,187▲ $47,815
Cash and Non-Interest-Bearing Accounts$65,969$61,355▼ $4,614
Prepaid Expenses and Deferred Charges$534$612▲ $78
Land, Buildings, and Equipment, Net$326$109▼ $217
Total Assets$1,649,768$1,779,752▲ $129,984
Liabilities
Total Liabilities$0$0→ $0
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$1,649,768$1,779,752▲ $129,984
Total Net Assets Fund Balance$1,649,768$1,779,752▲ $129,984
Total Liabilities and Net Assets / Fund Balance$1,649,768$1,779,752▲ $129,984

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$109$2,189$2,298
Compensation and Service Providers
Top Officer PayScore unavailable

Employees

NameTitleFull / Part TimeBaseTotal
Dawn BaumgardnerExecutive DirectorFT$65,704$65,704

Board Members and Trustees

NameTitle
Kathi VromanVice President
Anita Shier BrutonDirector
Anthony MarcheseDirector
Cara BreidsterDirector
Charles BrownDirector
Jacy DowneyDirector
Jamie DermatisDirector
Lauren BradyDirector
Rebecca DegroffDirector
Carol MancusoSecretary
Peter BaumgardnerTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$442,809
Program Service Revenue
$0
Investment Income
$56,639
Other Revenue
$0
All Other Contributions
$405,487
Change in Net Assets
$102,306

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
No
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported Amount
Securities Publicly Traded2$11,280
Total Noncash Contributions2$11,280
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Grants and Similar Amounts Paid$215,000
Other Expenses$107,986
Salaries, Compensation, and Employee Benefits$74,156
Total Fundraising Expense$5,355
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$120,000--$120,000
Conferences and Meetings$95,160--$95,160
Foreign Grants$95,000--$95,000
Current Officers, Directors, Trustees, and Key Employees$49,278$13,141$3,285$65,704
Payroll Taxes$6,339$1,690$423$8,452
All Other Expenses-$6,461$1,647$8,108
Fees for Services Accounting-$4,500-$4,500
Depreciation Depletion-$218-$218
Total Functional Expenses$365,777$26,010$5,355$397,142
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Stanford University - Dr Kathleen SakamotoRedwood City, CA501c3Research Proposal$70,000
Stanford University - Dr Maria BarnaRedwood City, CA501c3Research Proposal$50,000

International Summary

Offices
0
Employees
0
Spending
$95,000

International Compliance

Foreign grant records maintained
No
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe (including Iceland & Greenland) - Albania, Andorra, Austria, BelgiumGrants to Recipients Located in Region.Grants for Study of Diamond Blackfan Anemia.00$95,000
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$0
Fundraising Gross Income$0
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
CHARLIE'S HOPE GOLF TOURNAMENT$30,000---
Total Events$37,322---
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
Yes
Annual disclosure for covered persons
Yes
Audit committee
Yes
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section A, Line 2

“Executive director and treasurer are married to each other.”

Form 990, Part VI, Section B, Line 11B

“Form 990 available for review upon request of board members before filing.”

Form 990, Part VI, Section B, Line 12C

“Current responsible persons annually complete a disclosure form identifying any relationships, positions or circumstances in which they are involved that could potentially be a conflict. The policy is reviewed annually and amended if necessary. Any new responsible person is required to review a copy of the policy and sign off on it.”

Form 990, Part VI, Section B, Line 15A

“Salaries are determined at the board level based on non-profit salary surveys, previous salary of the employee, and the current budget.”

Form 990, Part VI, Section C, Line 19

“Dba website and upon request”

Filing and Contact Details

Filer

Filer Name
Diamond Blackfan Anemia Foundation
EIN
16-1459422
Phone
7166742818
Address
20 TRACY LYNN LANE, WEST SENECA, NY 14224

Signing Officer

Name
Peter Baumgardner
Title
Treasurer
Phone
7166742818
Signed
2025-11-11
Discuss with paid preparer
No

Organization Details

Principal Officer
Dawn Baumgardner
Formed
1994
Legal Domicile
Ny
Voting Board Members
12
Independent Board Members
10
Employees
1
Volunteers
20

Preparer

Firm
Lumsden & Mccormick Llp
Address
369 FRANKLIN STREET, BUFFALO, NY 14202
Preparer
Sarah M Hopkins
Phone
7168563300
Supplemental Narrative

Additional Explanations

Form 990 Part XII, Line 2C

“The process has not changed from the prior year.”

Raw XML AppendixShowing 400 of 477 raw XML fields

This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt056639
IRS990/InvestmentInJointVentureInd00
IRS990/InvestmentsPubTradedSecGrp/BOYAmt01089567
IRS990/InvestmentsPubTradedSecGrp/EOYAmt01176489
IRS990/IRPDocumentCnt03
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt02189
IRS990/LandBldgEquipBasisNetGrp/BOYAmt0326
IRS990/LandBldgEquipBasisNetGrp/EOYAmt0109
IRS990/LandBldgEquipCostOrOtherBssAmt02298
IRS990/LegalDomicileStateCd0NY
IRS990/LoanOutstandingInd00
IRS990/LobbyingActivitiesInd00
IRS990/LocalChaptersInd00
IRS990/MaterialDiversionOrMisuseInd00
IRS990/MembersOrStockholdersInd00
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd01
IRS990/MinutesOfGoverningBodyInd01
IRS990/MissionDesc0THE MISSION OF THE DIAMOND BLACKFAN ANEMIA FOUNDATION IS TO ADVANCE RESEARCH INITIATIVES THAT PROMOTE A BETTER UNDERSTANDING, THERAPEUTIC STRATEGIES AND A CURE FOR THIS RARE BONE MARROW FAILURE SYNDROME. WE ARE DEDICATED TO PROVIDING PATIENT ADVOCACY, SUPPORT AND EDUCATION SERVICES TO INDIVIDUALS, FAMILIES AND MEDICAL PROFESSIONALS RESULTING IN IMPROVEMENTS IN THE DIAGNOSIS, CLINICAL TREATMENT AND MANAGEMENT OF THE DISORDER, WHILE ENHANCING THE QUALITY OF LIFE OF AFFECTED FAMILIES WORLDWIDE.
IRS990/MoreThan5000KToIndividualsInd00
IRS990/MoreThan5000KToOrgInd01
IRS990/NetAssetsOrFundBalancesBOYAmt01649768
IRS990/NetAssetsOrFundBalancesEOYAmt01779752
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt027678
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt01649768
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt01779752
IRS990/NoncashContributionsAmt011280
IRS990/NondeductibleContributionsInd00
IRS990/OfficerMailingAddressInd00
IRS990/OperateHospitalInd00
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherWebsiteInd0X
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd00
IRS990/PayPremiumsPrsnlBnftCntrctInd00
IRS990/PayrollTaxesGrp/FundraisingAmt0423
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt01690
IRS990/PayrollTaxesGrp/ProgramServicesAmt06339
IRS990/PayrollTaxesGrp/TotalAmt08452
IRS990/PoliticalCampaignActyInd00
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt0534
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt0612
IRS990/PrincipalOfficerNm0DAWN BAUMGARDNER
IRS990/ProfessionalFundraisingInd00
IRS990/ProgSrvcAccomActy2Grp/Desc0(ASH) EXHIBITION AT THE AMERICAN SOCIETY OF HEMATOLOGY ANNUAL MEETING (ASH) ATTENDED BY APPROXIMATELY 20,000 WORLDWIDE HEMATOLOGISTS TO PROVIDE THE LATEST CLINICAL AND RESEARCH INFORMATION PERTAINING TO DIAMOND BLACKFAN ANEMIA.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt011079
IRS990/ProgSrvcAccomActy3Grp/Desc0(ADULTS WITH DBA) A MEETING ORGANIZED TO ADDRESS THE UNIQUE PHYSICAL AND PSYCHOSOCIAL CHALLENGES CONFRONTED BY ADULT PATIENTS LIVING WITH THE RARE DISORDER. THE MEETING WAS OPEN TO PATIENTS 18 YEARS OLD AND OLDER AND A SUPPORT PERSON. IN ADDITION TO SEVERAL PRESENTATIONS BY EXPERTS IN VARIOUS PERTINENT FIELDS, THE WEEKEND LONG MEETING ALSO PROVIDED AN OPPORTUNITY FOR ADULT PATIENTS TO MEET EACH OTHER AND COME TOGETHER AS A COMMUNITY. PATIENTS AND THEIR SUPPORT PERSON WERE ALSO AFFORDED TIME TO DISCUSS THEIR INDIVIDUAL CONCERNS WITH SEVERAL WORLD-RENOWNED CLINICIANS AND DBA RESEARCHERS.
IRS990/ProgSrvcAccomActy3Grp/ExpenseAmt084080
IRS990/ProhibitedTaxShelterTransInd00
IRS990/PYBenefitsPaidToMembersAmt00
IRS990/PYContributionsGrantsAmt0624853
IRS990/PYExcessBenefitTransInd00
IRS990/PYGrantsAndSimilarPaidAmt0462295
IRS990/PYInvestmentIncomeAmt039292
IRS990/PYOtherExpensesAmt0198381
IRS990/PYOtherRevenueAmt00
IRS990/PYProgramServiceRevenueAmt00
IRS990/PYRevenuesLessExpensesAmt0-56238
IRS990/PYSalariesCompEmpBnftPaidAmt059707
IRS990/PYTotalExpensesAmt0720383
IRS990/PYTotalProfFndrsngExpnsAmt00
IRS990/PYTotalRevenueAmt0664145
IRS990/QuidProQuoContributionsInd00
IRS990/RcvFndsToPayPrsnlBnftCntrctInd00
IRS990/ReconcilationRevenueExpnssAmt0102306
IRS990/RegularMonitoringEnfrcInd01
IRS990/RelatedEntityInd00
IRS990/RelatedOrganizationCtrlEntInd00
IRS990/ReportInvestmentsOtherSecInd00
IRS990/ReportLandBuildingEquipmentInd01
IRS990/ReportOtherAssetsInd00
IRS990/ReportOtherLiabilitiesInd00
IRS990/ReportProgramRelatedInvstInd00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0493372
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0541187
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0442809
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0624853
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0382199
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0400779
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0428753
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt02279393
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt056639
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt039292
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt01639
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt03044
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt03726
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt0104340
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.82620
IRS990ScheduleA/PublicSupportPY170Pct00.82240
IRS990ScheduleA/PublicSupportTotal170Amt01969463
IRS990ScheduleA/SubstantialContributorsTotAmt0309930
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0442809
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0624853
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0382199
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0400779
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0428753
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt02279393
IRS990ScheduleA/TotalSupportAmt02383733
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd01
IRS990ScheduleD/EquipmentGrp/BookValueAmt0109
IRS990ScheduleD/EquipmentGrp/DepreciationAmt02189
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt02298
IRS990ScheduleD/TotalBookValueLandBuildingsAmt0109
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/EmployeeCnt00
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/OfficesCnt00
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTotalExpendituresAmt095000
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt0GRANTS FOR STUDY OF DIAMOND BLACKFAN ANEMIA.
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt0GRANTS TO RECIPIENTS LOCATED IN REGION.
IRS990ScheduleF/BoycottCountriesInd00
IRS990ScheduleF/ContinuationSpentAmt00
IRS990ScheduleF/ContinuationTotalEmployeeCnt00
IRS990ScheduleF/ContinuationTotalOfficeCnt00
IRS990ScheduleF/ForeignCorpOwnershipInd00
IRS990ScheduleF/ForeignPartnershipInd00
IRS990ScheduleF/GrantRecordsMaintainedInd00
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt050000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt145000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt0WIRE TRANSFER
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/MannerOfCashDisbursementTxt1WIRE TRANSFER
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/NonCashAssistanceAmt00
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/NonCashAssistanceAmt10
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0RESEARCH PROPOSAL
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt1RESEARCH PROPOSAL
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt0EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt1EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM
IRS990ScheduleF/InterestInForeignTrustInd00
IRS990ScheduleF/PassiveForeignInvestmestCoInd00
IRS990ScheduleF/SubtotalEmployeesCnt00
IRS990ScheduleF/SubtotalOfficesCnt00
IRS990ScheduleF/SubtotalSpentAmt095000
IRS990ScheduleF/SupplementalInformationDetail/ExplanationTxt0ALL GRANT REQUESTS (INCLUDING FOREIGN) ARE SUBMITTED TO THE DIAMOND BLACKFAN RESEARCH DIRECTOR (RD). THE RD THEN SEEKS OUT THREE INDEPENDENT SOURCES WHO ARE SPECIALISTS IN THE AREA RELATING TO THE RESEARCH PROJECT. THE RD SUMMARIZES THE INDEPENDENT REVIEWS AND SUBMITS THE SUMMARY REPORT ALONG WITH THE INDEPENDENT SPECIALISTS' REPORTS TO THE BOARD. THE BOARD REVIEWS AND IF A MAJORITY APPROVE, THE GRANT IS ISSUED. THE PRINCIPAL INVESTIGATOR, THE SCIENTIST WHO IS SPEARHEADING THE RESEARCH PROJECT AND WHO SUBMITTED THE REQUEST, PREPARES A MEDICAL AND FINANCIAL REPORT FOR THE RD/BOARD AT THE END OF THE PROJECT OR ON A MORE REGULAR BASIS IF DEEMED NECESSARY.
IRS990ScheduleF/SupplementalInformationDetail/FormAndLineReferenceDesc0PART I, LINE 2:
IRS990ScheduleF/TotalEmployeeCnt00
IRS990ScheduleF/TotalOfficeCnt00
IRS990ScheduleF/TotalSpentAmt095000
IRS990ScheduleF/TransferToForeignCorpInd00
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt037322
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt030000
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriOtherEventsAmt07322
IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm0CHARLIE'S HOPE GOLF TOURNAMENT
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt030000
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsOtherEventsAmt07322
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt037322
IRS990ScheduleG/FundraisingEventInformationGrp/OtherEventsTotalCnt06
IRS990ScheduleI/GrantRecordsMaintainedInd01
IRS990ScheduleI/RecipientTable/CashGrantAmt070000
IRS990ScheduleI/RecipientTable/CashGrantAmt150000
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501C3
IRS990ScheduleI/RecipientTable/IRCSectionDesc1501C3
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt10
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0RESEARCH PROPOSAL
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1RESEARCH PROPOSAL
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0STANFORD UNIVERSITY - DR KATHLEEN SAKAMOTO
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1STANFORD UNIVERSITY - DR MARIA BARNA
IRS990ScheduleI/RecipientTable/RecipientEIN0941156365
IRS990ScheduleI/RecipientTable/RecipientEIN1941156365
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0485 BROADWAY MAILE CODE 8838
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt1485 BROADWAY MAILE CODE 8838
IRS990ScheduleI/RecipientTable/USAddress/CityNm0REDWOOD CITY
IRS990ScheduleI/RecipientTable/USAddress/CityNm1REDWOOD CITY
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0CA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd1CA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd094063
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd194063
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0ALL GRANT REQUESTS (INCLUDING FOREIGN) ARE SUBMITTED TO THE DIAMOND BLACKFAN RESEARCH DIRECTOR (RD). THE RD THEN SEEKS OUT THREE INDEPENDENT SOURCES WHO ARE SPECIALISTS IN THE AREA RELATING TO THE RESEARCH PROJECT. THE RD SUMMARIZES THE INDEPENDENT REVIEWS AND SUBMITS THE SUMMARY REPORT ALONG WITH THE INDEPENDENT SPECIALISTS' REPORTS TO THE BOARD. THE BOARD REVIEWS AND IF A MAJORITY APPROVE, THE GRANT IS ISSUED. THE PRINCIPAL INVESTIGATOR, THE SCIENTIST WHO IS SPEARHEADING THE RESEARCH PROJECT AND WHO SUBMITTED THE REQUEST, PREPARES A MEDICAL AND FINANCIAL REPORT FOR THE RD/BOARD AT THE END OF THE PROJECT OR ON A MORE REGULAR BASIS IF DEEMED NECESSARY.
IRS990ScheduleI/SupplementalInformationDetail/FormAndLineReferenceDesc0PART I, LINE 2:
IRS990ScheduleI/Total501c3OrgCnt02
IRS990/ScheduleJRequiredInd00
IRS990ScheduleM/AnyPropertyThatMustBeHeldInd00
IRS990ScheduleM/ReviewProcessUnusualNCGiftsInd00
IRS990ScheduleM/SecuritiesPubliclyTradedGrp/ContributionCnt02
IRS990ScheduleM/SecuritiesPubliclyTradedGrp/NonCashCheckboxInd0X
IRS990ScheduleM/SecuritiesPubliclyTradedGrp/NoncashContributionsRptF990Amt011280
IRS990ScheduleM/ThirdPartiesUsedInd00
IRS990/ScheduleORequiredInd01
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0EXECUTIVE DIRECTOR AND TREASURER ARE MARRIED TO EACH OTHER.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1FORM 990 AVAILABLE FOR REVIEW UPON REQUEST OF BOARD MEMBERS BEFORE FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2CURRENT RESPONSIBLE PERSONS ANNUALLY COMPLETE A DISCLOSURE FORM IDENTIFYING ANY RELATIONSHIPS, POSITIONS OR CIRCUMSTANCES IN WHICH THEY ARE INVOLVED THAT COULD POTENTIALLY BE A CONFLICT. THE POLICY IS REVIEWED ANNUALLY AND AMENDED IF NECESSARY. ANY NEW RESPONSIBLE PERSON IS REQUIRED TO REVIEW A COPY OF THE POLICY AND SIGN OFF ON IT.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3SALARIES ARE DETERMINED AT THE BOARD LEVEL BASED ON NON-PROFIT SALARY SURVEYS, PREVIOUS SALARY OF THE EMPLOYEE, AND THE CURRENT BUDGET.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4DBA WEBSITE AND UPON REQUEST
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt5THE PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PART VI, SECTION A, LINE 2
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PART VI, SECTION B, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PART VI, SECTION B, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PART VI, SECTION B, LINE 15A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PART VI, SECTION C, LINE 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc5FORM 990 PART XII, LINE 2C
IRS990/SchoolOperatingInd00
IRS990/SignificantChangeInd00

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